Although a tough 2024, Ela wrapped it up by getting to spend Christmas at home with her family, playing in ways she never had been physically able to before, and celebrating her 5th birthday! It\u2019s hard not to tear up to see her run and play with her brothers without needing to take a break or turning blue. We are so thankful. So blessed. We don\u2019t want to ever take this gift for granted. Sometimes I just stare at her pink cheeks and lips just pondering all of God\u2019s goodness in her little face.<\/p>\n\n\n\n
Ela and I (Leslee) were back in Philly this week for appointments. Before we left the other day, unprompted, Josiah asked, \u201cMom, how many days are you going to be with us this time?\u201d It broke my mommy heart. He\u2019s gotten so used to me coming home for short trips and leaving for long periods of time during this past year. I wanted to tell him that I didn\u2019t have to leave for a really long time. But instead, I had to tell him about this trip. I told him, \u201cHopefully it\u2019s just for 4 sleeps, 5 days\u2026 and as long as Ela\u2019s heart is still doing good we can come back home really really soon.\u201d Ela had a hard time with this too. She obviously didn\u2019t want to go back to the Dr. so soon. She cried as she asked, \u201cHow long do I have to stay? When will we be back? When will I see Josiah again?\u201d So please join me in praying over our kids for these continuing monthly appointments\/separations. We can\u2019t give them concrete answers as much as we would love to. Each separation, especially for the oldest two, is difficult.<\/p>\n\n\n\n
As far as her appointments\u2026they went GREAT! It was such a relief to hear and see that her numbers and echo looked good for where she is right now post-transplant! Please pray this continues. Although much better, her antibodies are still slightly higher than we would like. So Ela will continue her monthly IVIG infusions and daily steroids for that. Another exciting thing\u2026we are finally able to start weaning some of the meds. She is currently on 10 medicines and some she has been on most, if not her entire, life. What a joy to hear that we can start decreasing them and maybe even by this summer be down to only having to take 7 medicines! That would be amazing! We appreciate your prayers for this process and also her ability to eat by mouth. She is making some progress but still requires overnight tube feeds for most of her nutrition. We hope to start feeding therapy soon. Ela\u2019s monthly follow-ups will continue through September. Her next heart cath procedure will be in March. <\/p>\n\n\n\n
Thanks for your continued prayers and support for our family. For those of you who wondered about whatever happened to that expensive GI medication that was denied by insurance\u2026.after 3 attempts it finally got approved! Big answer to prayer. Also, thank you for your contributions to help with medical needs. We already had to use COTA funds to purchase Dexcom sensors and other medical equipment, meds, and supplies when it\u2019s been denied by insurance (which happens more than it should) or when we can\u2019t get it in a timely manner from the pharmacies or med equipment companies. There are always so many monthly battles with just getting the things she needs. It\u2019s quite the frustration as some of you can probably imagine and relate. Since some have asked, yes, you can continue to contribute through COTA if you desire to do so. <\/p>\n\n\n\n
So many things to praise God for and some things to continue to pray for. Thanks for closely following and being a part of her journey. For these days we prayed\u2026.What a mighty God we serve! Enjoy the pics and videos below and rejoice with us!<\/p>\n\n\n\n
Ela rang the bell at the Gift of Life House before we left in December.<\/p>\n\n\n\n